*DISCLAIMER* This was written just before Alexander was admitted to the hospital with a neutropenic fever. An update on that will follow shortly. Our first week of chemo is in the books. There were so…
Start of Chemo and Good News
We are finally back on the treatment path. We checked in to Comer Children’s Hospital yesterday morning, expecting chemo to start by the afternoon. We waited for about 7 hours in a holding room before…
Treatment Starting Again
Today was the last day of our inter-treatment period. We had great experiences with friends and family. Tomorrow, treatment starts again. We thought we were going to go to Lurie Children’s Hospital for treatment, but…
Chemotherapy in Chicago
After much deliberation about the best options for Alexander and our whole family, we have decided to have Alexander’s chemotherapy done at Lurie Children’s Hospital in Chicago. St. Jude has been very good to us,…
Appetite Stimulant and More Choices
The boost treatments are underway. Alexander’s wakeups have not been any different, though we tried skipping the Precedex and letting him wake up quicker. No luck. We have resigned to getting him out of the…
Everything is hard
So dang hard. I keep trying to find lemonade. Here’s what I have today. When I sniff his head, it smells like when he was an infant. That’s all I got. Please keep sharing his…
Hot off the press!
2 days ago!!! Look what Rally Foundation for Childhood Cancer Research is funding for medulloblastoma! $150,000 in outside the box grants! We’re outside the box also! Ronald McDonald House of Memphis St. Jude Children’s Research…
Trying new things to calm post anesthesia rage
After 22 general anesthesias, chemo, and radiation treatments, we have decided that there is no way to ease his rage post anesthesia. Well, at least with medications. We went full force with all the happy…
If you know me then you know, I can be a lot
A lot of: Energy. Love. Optimism (to a fault). PASSION. Vulnerability. Just a little extra of so many things. Or maybe a lot. And it isn’t always easy to be vulnerable even though it may…
Day 20 of Radiation, Transitioning to Boost
Today was the final day of proton therapy to Alexander’s full brain and spine. It’s hard to believe we’ve been through 20 radiation treatments, 20 anesthesias, 20 stressful wakeups. Tomorrow he starts his boost treatments,…